Rare Diseases are Not so Rare

New Jersey Supports Rare Disease Day

Mar 7, 2018 4:00:46 PM / by John Kouten, CEO

NJ rare disease

JFK Communications attended the sixth annual Rare Disease Day in Trenton.  This critical event was convened to draw attention to the need for greater awareness of, and investment in, rare disease treatments.

Organized by The New Jersey Rare Disease Alliance, this event also included sponsorship and support from:

One of the key messages from this event is that rare diseases are not so rare. In fact, one in 10 Americans has a rare disease. Of these more than 30 million Americans with rare diseases, approximately half are children.

Shockingly, of the 7,000 rare diseases, there are only 500 FDA-approved treatments -- only 5% of rare diseases have treatments.  Confounding this problem is the fact that rare diseases are frequently misdiagnosed or undiagnosed.

The 2018 Rare Disease Day event included participation by numerous policy experts, patient advocates, industry representatives and legislators.  The main theme of the event was to drive change at the state and federal level to support greater patient access to treatment and increased funding for research.

Congressman Leonard Lance (R - NJ Dist. 7), delivered passionate remarks encouraging the attendees to raise the noise level with local, state, and federal legislators regarding rare disease issues and funding.  Representative Lance is a strong advocate for the life science industry – especially supporting extended patents for orphan drugs.

“I advocate longer periods of exclusivity for orphan drugs. Up to 12 years would provide a greater incentive for industry focus on rare disease drug development,” said @replancenj17 Leonard Lance, NJ congressional representative. “We are the epicenter of global medical innovation. And New Jersey is the international medicine chest.”

Topics: digital communications, digital marketing, life science marketing, rare diseases, orphan drugs, life science PR, life science communications

John Kouten, CEO

Written by John Kouten, CEO